Chapter 18 – Therapeutic trials and tribulations

Just after I got out of the hospital, I was told there was an open spot in a program run by the Christopher and Dana Reeve foundation called the NeuroRecovery Network (NRN), which was being conducted at Craig hospital as well as 11 other facilities such as the Shepard Center in Atlanta. The idea of the program is to apply new scientific knowledge on the plasticity of the brain and spinal cord to “activity-based therapies that promote functional recovery and improve the health and overall quality of life for people living with paralysis.” That particular spot went to Elle, a woman with a similar injury level who I was in the hospital with, while I went to school. I think I would have had a lot of anxiety had I taken another semester off, even if it was for rehab which could, potentially, have significant effects on my functionality. Plus, the spot could not have gone to a better person, she is an amazing human and very clearly brings a lot of joy to the people around her.

After my first semester back at school, another spot was opening as my summer vacation was coming around, so things lined up really well in the end. Sure, I could have been taking summer classes to finish school quicker but I was trying to balance my rehab and finishing school; also, there is a much more pressing timeline for the therapy, as the earlier the intervention, the better the possible outcome, especially within that semi arbitrary 2-year period post injury. Needless to say, I jumped at the chance to take a break from classes, come up for a metaphorical breath of air, and at least, get a bit stronger and at best, regain function to some level. The program was split into two sections; a PT side focused on locomotor training and an OT side focused on functional mobility training, both of which utilized Neuromuscular Electrical Stimulation (NMES). You remember those late-night infomercial “ab belts” that basically just shocked your ab muscles to make them twitch? It’s basically a fancy medical version of that.

I had therapy Monday through Friday from 9 am to 12:30 pm; each session was 1.5 hours with a half hour break in between. After the 45 – 60 min drive to the hospital, the first session was Locomotor Training with PT in the PEAK center, one of the only places big enough to house that equipment. The first move was to transfer onto a therapy mat where they would attach a series of electrodes on my legs such that every pair of electrodes passes electricity through the target muscle by attaching an electrode at each end; they often had to be adjusted to get the best results. This was also where I started to practice how to do independent transfers; it’s really useful to be able to practice multiple times a day, every day, with highly experienced therapists helping or standing by.

The next step was to put on a full body harness, with little blocks of foam slipped between the harness and me to prevent pinching or chaffing. I would then pop back into my wheelchair and roll my way up the ramp and onto the enormous treadmill; it was about the same width as a normal treadmill, maybe a bit wider, but it was probably twice as long. Above the treadmill there was a rail system that accommodated what looked a lot like an engine hoist with an auto-leveler; picture an upside down triangular metal plate, with each top corner being attached to one of the overhead rails, the remaining corner was attached to the harness, suspending me from overhead while still allowing me to move forward or backward. The whole operation took 4 therapists working together to pull off; One therapist was in control of the treadmill and monitored the time, one therapist stood behind me and controlled my trunk by holding the harness, and the other two therapists would sit on the side of the treadmill, one able to move my left leg and one able to move my right leg. Essentially, as the treadmill starts to move, the two therapists on my legs would start moving my feet in a walking pattern as the electrodes fire in the correct order and timing to replicate a normal walking gait. It’s a whole “Weekend at Bernie’s” experience.

The Lokostation treadmill.

After the PT treadmill session, I’d hop back in my chair and head to the outpatient therapy room for the OT session. This time, the electrodes were attached to my arms, neck, and back. The electrodes were arranged in specific patterns and locations depending on the intended motion pattern; imagine it being the electrical version of a puppeteer learning which strings to pull in what order to produce the intended motion. One of the biggest differences when the electrodes were attached to my arms and neck rather than my legs or even back, was that I could often feel the areas where they were attached. If the electrodes are making good contact with the skin, the pulses of electricity cause a contraction of the muscle; however, if the electrode was dirty, there was too much body hair, the electrode just wasn’t fully attached, or the adhesive was giving up, the electricity felt like something ranging from a small tingle to a fist full of needles. There were days where we just couldn’t quite figure it out and after 30 min of adjustments, we had to just call it and try again the next day. The majority of days, when things were generally working as intended, they would use a combination of the electrodes and a foam wedge or straps to help me sit at the edge of the therapy mat with my feet on the floor. As I sat there, the other electrodes would begin firing in a set pattern, duration, and strength, all user controllable, as I went through the corresponding functional movement, like reaching out to grab a can.

Thinking back, I was wondering how I had the energy to do all of it, but then I remembered that, back in those days, my family and CNAs were doing everything for me. They were cooking, cleaning, doing my transfers, bowel program, showering, getting dressed, etc. EVERYTHING. So, it’s no wonder I had a lot more energy to spare; I don’t think I would have the energy to do all of it if it wasn’t for the ridiculous amount of help that I received from everyone around me. Plus, everyone I worked with was fantastic. From the therapists to the assistants and OT/ PT students, everyone just made it an experience to look forward to and helped me make the best of my recovery. Even in the smaller moments where I wasn’t necessarily making the intended or targeted progress, they helped me develop a better ability to communicate what I am feeling and sensing and what I need from them in the moment. Incidentally, they helped me develop a better sense of balance and body positioning, something that has had a profound impact on my independence.

Shark bite ooh ha ha…

One day I showed up for the treadmill and was in a significant amount of pain and discomfort; the specific location and source was unclear but something felt off with my butt, crotch, or thighs. This wasn’t really new, or even drastically worse than usual, just bad enough to alter my behavior. We were in the process of putting the harness on but I think they sensed my hesitance and started asking questions. This was well before I had developed any real idea of how to interpret the flurry of random signals from my body so I didn’t know what was wrong. My doctor happened to be walking through the gym and they grabbed him to get his thoughts. I’m not sure what happened but when he came over and I started trying to explain what I had told my therapists just moments before, tears just started flowing uncontrollably. It was as if everything that I had been holding back and just silently dealing with over the last month, came right up to the surface and I was not emotionally prepared for it. We went into one of the side rooms for privacy to do a proper examination.

It turns out that I had an abscess that had formed in the perineum, the area between the anus and scrotum. Apparently, they can be quite painful, a fact that made me feel much better about the whole ordeal. It’s embarrassing to cause a whole thing only to find out everything is fine; again, like the princess and the pea, only sometimes there is no pea and other times the mattress is on fire or the pea is a landmine.

I was referred to a specialist and the abscess was drained and I was given instructions on how to care for everything. However, after a while, when the drainage site had refused to close, I had to go back in for another check. People who suffer SCIs typically require longer amounts of time to heal but even my dad was concerned about what was happening. As a doctor, he was always my barometer for when to worry about things. For example, when I was living in Japan, I woke up one morning, or more likely mid-afternoon, after a night out drinking and one whole half of my face was just not responding. I tried just about everything but that half of my face just sat unresponsive. Freaked out, I called my dad and he calmly explained it was most likely Bell’s palsy and not a stroke. For whatever reason, his explanation that it should go away “maybe in two weeks, two months… or maybe never, but it should be ok” was all I needed to hear; he just didn’t seem worried so I figured I would roll with it and see what happens. Sure enough, it was just a long couple of weeks of feeling like two-face from Batman, with my friends cracking jokes to watch half my face laugh. This time though, he did seem concerned which definitely peaked my anxiety, the canary in the coal mine was dead.

After a thorough examination, it was determined that the abscess had created a fistula, a small tunnel between two hollow spaces that shouldn’t be there, in my case this was between the abscess and the inside wall of my intestines. I could feel my anxiety rise as he was explaining that it would require surgery to fix. At one point he explained that they would basically need to cut things wide open and then let it heal from there. When describing how things would look, he definitely told me I would be better off not looking at it as it would “look like a shark bite.” I started giggling, both at the description and because “shark bite, ooh ha ha,” [I’m aware it is actually, “shark bait, ooh ha ha”] immediately popped into my mind. My amusement was quickly dampened when he clarified, “no, seriously, it will look like a shark tooth went all the way in…” at which point all I could think was “awww fuck…” but given that there really wasn’t another option, we went ahead and scheduled the surgery.

The surgery was at the hospital next door to, and actually attached to, Craig hospital, and was where all of the major medical procedures happen while you are at Craig, so I was pretty familiar with both the environment and the check-in procedures. I began filling out the random paperwork they had for me, when one of the nurses stopped and introduced herself to me. It turns out, she was the mother of one of my favorite people from my NRN therapy. Combined with her soothing demeanor and my familiarity with the location, I was completely at ease. We chatted a bit before they took me back to get prepped for the surgery.

I opened my eyes and tried looking around but my body wasn’t really responding; I felt half drunk and half like I was dreaming. I saw my dad, who had driven me there, and I tried to tell him I was awake and that they needed to try to knock me out again. Turns out, by the time that I blinked, they had knocked me out and done the surgery, I was just waking up, almost ready to go home. As I sat there, with the anesthetic fog slowly lifting, I defaulted to people watching and eavesdropping, not that I was capable of anything more. There were only a few other patients in the recovery area, or at least only a few that were conscious and making noise. One guy was on the phone with someone, making arrangements to be picked up; another guy was being an ass hole and making demands for shit that he could have easily just asked for and I’m sure they would have been happy to accommodate. There seems to be a significant increase in misdirected anger in hospital or healthcare settings as compared to normal life. It’s a lot like the increase in rage when people are driving; the baseline stress of the environment puts people on a hair trigger.

When they came to tell me that I was clear to go home, I was still a little foggy but I felt like I could function. I was really skeptical when they told me there were basically no restrictions on my actions, including my transfers. One of my transfers consists of putting a wooden board across the space between where I was and the seat I was going to and then sliding across until I was in the new seat. Given they had just essentially cut me a new ass hole, it seemed surprising that wasn’t going to cause damage. Turns out, they knew what they were talking about and the transfer went fine.

The wound had to be packed and bandaged every day, another reason why having my dad around the whole time was so amazing. I did NOT trust my nurses at the time… they had a habit of not getting my medications correct, having things go wrong on catheter changes, etc. This meant that there was a time after I was in the shower and before I was back in bed, when the wound was uncovered. The transfer from my commode chair to the bed used a portable version of the overhead lift from the hospital, meaning I got rolled passed by the bedroom mirror, hanging in the air, legs splayed like I was preparing for a gynecological exam. I did well in not looking at it for a week or two but eventually curiosity killed the cat and I glanced at the horror show. All I remember thinking is, “oh holy shit, he was not joking… did they literally have a shark bite me? [shark bite, ooh ha ha] Is that how the surgery is done? The wound was about 1.5” long x 1” wide x 1.5” deep. For a while, the anxiety made my movements and transfers less deliberate and therefore less smooth, which made the caution counterproductive. Knowing you have a large wound, you would expect that it would be great to not feel it, but in reality, it only causes more anxiety because anything you do might be making it worse and you wouldn’t know, perhaps until things are out of control.

Over the next couple of months, the opening slowly closed. It’s excruciating how long things take to heal as a quadriplegic. I’ve tried to find out why exactly it is that healing from superficial cuts and scrapes seems to be such a problem, but the answer seems to be still up for debate; though, part of the problem seems to be the lack of neuroimmune signaling… which someone far smarter than me will have to explain, but is a bit like if parts of your body lose some of their ability to call for help. I try to eat enough calories, which is honestly a huge struggle and something I’ll discuss next. I try to eat protein, vitamins, iron, zinc, etc. all to try to help speed things up but little scrapes on my foot are still visible weeks after they happen, so you can begin to imagine how long it might take to heal from a shark bite [shark bite, ooh ha ha].

You might be wondering what a shark bite feels like in an area you can’t feel, but sensation is a complicated combination of touch [fine or deep], pain, temperature, proprioception [the ability to sense where a body part is in space], and pressure. Every sensation has to be turned into an electrical signal before being transmitted up the spinal cord, to the brain. The things that turn mechanical inputs to electrical signals are called receptors. If you have an “incomplete” injury, you can have a wild mix of sensation abilities in a pattern that somewhat resembles a calico cat or maybe a paint by numbers picture. It’s like someone tried to cut a bundle of wires but they didn’t quite make it all the way through, so some signals still make it through. Like, maybe you close your eyes and someone squeezes your toes, you feel the tingling in your toes, quickly radiating up your foot and you open your eyes and your foot is nowhere close to where you thought it was, showing that touch and proprioception are separate sensations. Maybe you can sense pressure on both palms, but only your right hand can tell if you are working shampoo into your hair or are just rubbing your head, which is a great example of the fact that there are four different types of receptors just for touch. Or, maybe you hold your arm out in the shower to test the temperature and can feel each drop of water hitting your arm but slowly realize you don’t have any clue if it is room temperature, freezing, or scalding hot, demonstrating how touch, temperature sense, and pain are not necessarily a package deal. You might also figure that not being able to feel pain might be kinda nice, until that day when you are pulling something out of the toaster oven and you smell something funny and it turns out to be the smell of the skin on your arm cooking on the metal door you didn’t realize you were touching.

In my experience, as soon as I thought I had figured out how to use the specific combinations of sensations I had at the time for something useful, there would be a slight change that felt like it wiped out any progress I made. For example, when my catheter bag is full, when I have to go to the bathroom, or if I have mild pain in my legs, I get goosebumps, but I can use subtle differences in the way they happen to determine their cause. However, a recent change in sensation has meant that I am back to square one and have to relearn the game. In reality it was probably more like two steps forward one step backwards, but even a half step backwards can be painful when you are clawing your way back from the bottom. The whole process makes me feel like the superstitious pigeon in B. F. Skinner's experiment, where the pigeons develop superstitious behavior because they are convinced that they figured out the trick to receiving food, when in reality there was no trick, they just got food at regular intervals. [it’s a minor side quest of mine to make it so when people see someone doing something ritualistic or superstitious, they think of a pigeon turning in counter-clockwise circles, thinking that is why food is appearing]. Granted, this marriage between our desire to find patterns in things and our desire to believe we exert control over our environment is the birthplace of culture and tradition, and is probably how we first started to learn to manipulate our environment as a species; in the beginning, the difference between superstition and science was essentially nonexistent.

Another strange part of my particular presentation of sensations is that I don’t always feel things where they are happening. I mean this both in the sense that I don’t always know where my legs are in space or how they are oriented, but more specifically, in the sense that sometimes pain in an area that I can’t feel somehow registers somewhere nearby where I do have some sense of pain. What do they say? “A doctor who treats themself, has a fool for a patient”? I don’t even have a medical degree, nor am I even a doctor in the academic sense. That being said, I think that this referral of pain might be what keeps me from getting autonomic dysreflexia, something I will describe in detail, shortly.

It’s difficult to properly describe exactly what my nerve pain feels like. From what I have gathered, the sensation is different for everyone and often changes over time, or at least our perception of the pain changes. For me, the nerve pain blends rather seamlessly with actual pain and random nerve signals, making it incredibly challenging to determine what pain is real and needs to be acted on and what is just by body crying wolf, where no amount of effort will have an impact. My nerve pain tends to feel like intense pins and needles. You know when your leg falls outrageously asleep, to where you can’t feel it at all and it feels like your leg has been swapped for a cadaver leg? That is essentially my baseline, and sometimes the nerve pain feels similar to when your leg begins to wake up and you get those hyper sensitive pins and needles but instead of being able to sit motionless and avoid the shock, someone is giving you a foot massage. Other times, it feels as if you just slid across asphalt and scraped a good deal of skin off, and now you are trying to sit or lay down on top of it. Generally, I have heard people describe it as burning, stinging like bees, being wrapped in burning tape, a constant hum, or stabbing compression [From Quinn Brett]. 

My most intense nerve pain typically happens in my legs, specifically in my butt cheeks and thighs, coincidentally where I am most likely to get a pressure sore. I say “coincidentally” with absolutely no confidence. At times I think I am feeling the discomfort I must be in from continuously sitting for such long periods of time. Of course, I move around a lot more and do more weight shifts when I feel that pain but I have also noticed that, typically, the worse I feel, the better my skin actually looks. A fact which would relieve a lot of the associated anxiety if it weren’t for the fact that on occasion, I actually do feel something bothering me, and because I take action, I am able to mitigate any damage or harm from whatever it was. For example, in the past, throughout the day my pants used to begin to inch lower and lower until the waistband was just under my tailbone, this additional pressure causes the nerve pain in both butt cheeks to start ramping up, which is why I typically found myself sans pants by midafternoon. However, sometimes I take the pants off thinking that is the issue, only to realize that it’s just normal nerve pain and I didn’t have to frantically disrobe. Obviously, not having pants on isn’t actually a problem unless you realize you have to leave the house for any reason, like to grab a package, go get food, or just to see a crazy sun set.

Sometimes sensation comes back in random areas, even 7 years in I am still finding that I am regaining sensation in small spots. It’s never full sensation, or at least it hasn’t been yet, but it can be the ability to sense pressure, letting you know if it is touching something. Unfortunately, it can also just be the ability to sense pain, real or nerve pain. It’s a real mixed bag, there are definitely days where I contemplate if there is a way to just completely cut the spinal cord so I can’t feel anything, but I know that would also wipe out a lot of useful feelings and sensations… still feels worth a thought or two.

If the pain passes a certain threshold of severity, my body seems to be aware of it on a local level, which reminds me of octopus, which have their neurons spread throughout the body/ tentacles rather than being localized in a central brain, allowing the tentacles to operate autonomously; I was recently watching a hunting show and a guide was explaining how to handle octopus after you catch them, it involved putting their head in your mouth and biting until they go limp, his line was “they are not dead, just paralyzed…” relatable. For example, I made a corn dog the other day and when it was done, I used my grabber tool to pull it out of the toaster oven and put it in a bowl on my lap; what I didn’t realize was that the bowl shifted a bit and the stick was now touching the skin on my leg; I might have been rolling around in my underwear making corn dogs… yes it was multiple… judge me. Your judgment will never compare to what I felt while drunk, walking into a convenient store in Japan and having to order 2 American dogs… because that is what they are called, and yes, I had to. After only a second or two, my left leg jumped into the air in reaction to the stick that I had just baked for 5 min touching my skin, the thing is, I never consciously felt anything, and even if I had, I have no ability to control my leg to get it to jump like that. Further indication that I have a leg, fully capable of not just moving, but sensing and reacting to pain, just not capable of coordinating or communicating any of that with my brain. So close, yet, so far.

I’ve found that there is a fairly straightforward way to judge if I am having a good or bad pain day, and that is to see if I can tolerate listening to music… I know, I sound like a blast to be around, right!? It may sound a bit ridiculous but once my level of pain passes a certain threshold, external stimuli can feel like they are just overwhelming. Music is apparently a good measuring stick for me. I’ll happily rock out and dance to music at full volume through a good deal of pain; but once I pass that level, I just need the world to shut the fuck up and stop touching me. As the pain and anxiety build, I start eliminating all noise sources if I’m awake, I’m wearing noise canceling headphones, stripping off clothes, and trying to perfectly match my skin temp and the ambient air temp; I basically want to crawl into a sensory deprivation tank. I also essentially stop acknowledging that someone may be talking to me; my brain's computing power is fully dedicated to holding it together, leaving nothing for socialization. Thinking back about how often I am in so much pain that music of any kind is just too much gives me mixed emotions; on one hand, it’s reassuring to look back and see the shit that you made it through to get to where you are, but it’s also a bit painful to see that little demon that has prevented you from doing so many things, and to know it may never leave. For example, I would love to go mountain biking, but given that going over a crack in the sidewalk in my power chair with fancy oil suspension feels like getting stabbed with an ice pick, getting tossed around on an off-road trail sounds like absolute torture. Plus, it’s not like it just numbs out; for me, it just keeps building, making my muscles tense up more and more, until it feels like my entire body is getting a Charlie horse and I can’t move.

Recently, while my dad was visiting from Japan, we discovered that something in my leg was causing the calf to pull tight, like, really tight. I had felt it before over the last year but it was pulled so tight that I had just legitimately thought it was bone. Basically, but not literally, I had been having a Charlie horse in that calf for nearly a year, explaining at least some of the outrageous pain I had been in. It took weeks to massage it and get it to start to release but there was no telling if the muscle tension was the problem or if it was a symptom of something more serious. In my defense, I never felt any of the pain directly in my calf, it was always at the end of my foot or up at my left butt cheek, just under the IT bone. I was in so much pain that working became nigh-on-impossible, socializing wasn’t going to happen, and my brain was looking for any escape; at multiple points it occurred to me that the pain may be without cause, and therefore not something that can be mitigated, and it may go on forever, leaving one grim solution if you can’t push through the pain.

During this time, I also managed to get a second degree burn on that foot, further muddying any sense of direct cause and effect analysis. When multiple parts of a leg are screaming in pain, but that pain all gets funneled or translated through a single point, shit gets confusing. Imagine 5 people are screaming at you simultaneously in Russian, presuming you don’t speak Russian, and you have your phone as a translator and it is just translating words as it hears them, it would be pretty difficult to understand anything other than that people are aggressively saying things at you…  Thankfully, for the time being, the muscle is relaxing and now I am just in pain, not a lot of pain or excruciating pain, just in pain, and it is SO much more manageable. Maybe one day I will have a day where I am not only pain free, but also not constantly anxious, waiting for the pain to come flooding back, as sure as the tide.

However, typically as soon as one form of pain goes away, I begin to anticipate the next form of pain that will take its cue and step in as my new dance partner. I live in what I like to refer to as a pain onion or a Matryoshka doll of pain; Whatever the outermost layer or shell is, is the type of pain I feel currently. Is it going to be nerve pain today? Hemorrhoids? Pain from an injury? Some inexplicable pain from somewhere deep inside? Hell, it may even be entirely mental. Each time you eliminate one type of pain and peel back that layer, there is a fleeting feeling of relief and hope; but it also seems to just reveal the next layer of pain for me to experience. One of the biggest kicks in the proverbial balls is when all the physical pain fades and my brain begins to celebrate, only to be horrified by the sudden realization that I can now feel emotions… and it’s not always the good ones. It seems like a cruel twist of irony that a sudden lack of pain can be the impetus for an emotional breakdown; “Oh, no pain!? Here’s all those fucked up emotions that have been buried beneath the pain.”

I will try to keep the technical description as digestible as possible. The autonomic nervous system is responsible for controlling internal non conscious processes such as your heart rate, blood pressure, breathing, and digestion. There are two antagonistic branches of the autonomic nervous system: the sympathetic nervous system, which is quick to respond and is responsible for the fight or flight response, and the parasympathetic nervous system, which acts as a slower moving damper and controls processes such as digestion, tear production, salivation, and sexual arousal, to give the most basic description. 

With that in mind, people who sustain injuries at or above the T6 vertebrae (just between the bottoms of your shoulder blades) are likely to suffer from something called autonomic dysreflexia, where the sympathetic nervous system ramps up the blood pressure and the heart rate drops in response to pain below the level of injury, but the parasympathetic nervous system doesn’t act to counter these effects, as it should, which can quickly lead to a stroke, seizure, or cardiac arrest. It’s a bit like if your phone line got disconnected so you started sending smoke signals, as you do; they start off small but because you don’t see a response you start increasing the size of fire used, but you still don’t see a response, so you keep increasing the size of the fire… before you know it the whole neighborhood is on fire. In this case, that equates to having a stroke. This could all be because of a hangnail on one of your toes, your bladder is full, constipation, hemorrhoids, a pressure sore, etc. the list is seemingly endless. When the consequences of doing nothing are possible brain damage or death, there is a certain amount of anxiety and urgency to identify the issue.

When it comes on, some of the main symptoms people experience include: severe headaches, chills and goosebumps, sweating [even in people who can’t otherwise sweat], loss of vision and seeing spots, anxiety, flushing of skin, and a slowed heart rate. For me, it starts with goosebumps, and depending on the cause there can be subtle differences in how you feel them; do they start at the elbow and radiate up? Or more concentrated on the back of your neck? Next, as my blood pressure rises, breathing becomes a little more difficult, as if someone had just dialed up the thickness of the air. Finally, as my blood pressure reaches more dangerous levels, the skin on my neck begins to flush and I begin to sweat, not like a normal person, but only from the right half of my neck, and that is the only time I sweat.

After a while, I learned the subtle differences in the way symptoms would come on due to the different issues, and I only experience AD in a very limited set of circumstances, so the associated anxiety has gone down. From time to time, I still get random moments where it starts to run away and if it’s not one of the usual suspects, I still start to freak out a little. In fact, just the other day, I woke up early and had to go to the bathroom, but when I was in the shower afterward, I started getting AD symptoms but couldn’t figure out why it was happening. I couldn’t help thinking that I was going to have a stroke and was going to be found dead and naked in the shower, which would be less than ideal. It eventually went away but I’m entirely unsure why.

There are a limited number of interventions when people experience AD; you can sit upright [do not lay down, as it can further raise blood pressure] and search for the cause or call 911, and that’s about it. Keep in mind that I live alone and am a high functioning hermit, so options like Nitroglycerin paste, which cause blood vessels to dilate, dropping your blood pressure, are not always worth the risk. There was even an entire class at the hospital on everything involved with AD that my family and Autumn took. Apparently, Autumn stays current on everything every 6-ish months, meaning she probably knows things in better detail than I do; I essentially know just enough to keep myself alive… hopefully?

Because I live so close to Craig Hospital, every time I have run into a new problem or found some goal that I wanted to accomplish, I could email my therapists and schedule a session for one of my off days, or just any time between semesters. The vast majority of my therapy happened before I could drive, which meant that each trip required stealing a day from my dad or sister and having them drive me the 45 - 60 min there and the 60 – 90 min home. For me, that meant that there was a level of guilt built into each trip, which, if I’m being honest, I probably took out as micro aggressions towards them; not always, but when I started getting tired or worn down and I wasn’t able to control myself as much as needed. It still happens with my sister to this day, sometimes the aggressions are far from micro, delving into the milli-, centi-, and even deci- aggressions… kidding, I’m a proper asshole at times, and she just blows right through it, silently highlighting what an ass hole I am being and signaling me to reprioritize being a better person.

Living that close and having the access to some of the best therapists in the country who specialize in my particular diagnosis was absolutely invaluable to my quality of life and my progression to independence. The on and off nature of my therapy because of school or work helped me really discover what challenges I was going to face trying to live independently and resolve them as they came up; as opposed to trying to predict all of the problems and goals I might have and address them all at once, given fuck all experience as a quadriplegic. Some of the issues that came up were definitely predictable, but even with those, I think it was helpful to space them out and address them one at a time. It allowed me to try something in therapy and get an idea of how it works and then try it in a real-world environment to see if it translates; if it does, great, but if not, we just circle back around and try something new next session.

It’s honestly pretty amazing that therapists can help troubleshoot certain issues because it’s virtually impossible for them to put themselves in my position; you can’t just turn off certain muscles and decide not to use them, that’s not quite how the brain or body works. This is also why I dislike the publicized “day in a wheelchair” videos, most issues we deal with aren’t experienced in a single day and aren’t solely down to being in a wheelchair; it’s the reason that we are in the chair that really poses the issue. Now, if my friend wants to roll around in one of my chairs for fun or personal education, I’m totally good with that and would encourage it. Thinking, “oh shit, how do you do xx?” is great, thinking “oh, this is what life is like for you?” is more problematic. In any case, they were able to help me work through everything from putting on socks to cooking and baking. I can’t emphasize enough how amazing my therapists were; similar to math or physics teachers, good ones can drag the absolute best out of you and make you push for more when you don’t think you have anything left, while the bad ones make you regret even showing up to try. I was spoiled at Craig hospital with the abundance of amazing therapists, I didn’t run into a therapist I wasn’t thrilled with until long after I had left.

An important thing to highlight is that my situation was essentially the best-case scenario, as a straight white cis-male that’s not exactly surprising. I was basically fully covered between Colorado Medicaid and my insurance through CU Boulder, which I had always chuckled at wondering “when is that ever going to be worth it?” A few million dollars later… “ahh, I see.” It was the most important unimportant box I’ve probably ever checked. Some people’s insurance wouldn’t cover the typical three months at Craig hospital and they would get sent home while still scrambling to reorient themselves; a bit like getting thrown out of an airplane with a parachute after a brief explanation of how it works, “good luck!” Others end up at hospitals and rehab centers who are unfamiliar with spinal cord injuries meaning that people can end up with massive pressure sores, ineffective medications, prescriptions for inappropriate or ill-fitting wheelchairs, or a wide variety of other issues. It’s pretty sad that here in America, we still don’t think that a basic level of healthcare is something everyone deserves; people beg not to have an ambulance called because of the cost of the ride, imagine being in excruciating pain but crying because of the anxiety over medical costs.

Throughout my time at Craig Hospital, both in-patient and out-patient, there were LOTS of different therapists, including assistants and students, who I either worked with or saw on a regular basis. I could probably write an entire book on all of the different people I had the privilege of meeting; and I feel guilty not naming each person, as they all contributed so much to my recovery and life in general. It doesn’t help that I am awful with names, which is always embarrassing when seeing people, but I would probably forget my sister's name if I didn’t talk to her so often. I couldn’t hope to name everyone who deserves mention. Funny part is, I’m not even sure who knows me, who has just seen me a bunch in passing, or if any of them would even want to talk. My main goal is just to not bother people or make them uncomfortable; so, my internal sense of excitement and joy at seeing them when I visit Craig, probably just comes off as vague recognition. Even if it does come off as excitement or joy, it pales in comparison to what I am feeling; I’d jump up and give them a hug, if the premise of our relationship wasn’t my inability to do exactly that. It’s hard for me to put into words my immense gratitude for what they do. Not only are they there trying to help maximize whatever physical abilities you have left, but they are dealing with you when you are at your most fragile, frustrated, and vulnerable, constantly trying to balance roles as a psychologist and drill sergeant; not that they ever screamed at me, but knowing how dedicated they are, if that is what you need, I’m sure they would oblige. So, to yet another large group of people, thank you all so much for everything that you do and for putting up with people like me every day.

It was around May of 2019 that I got a call from Candy Tefertiller at Craig hospital asking if I might be interested in participating in another medical trial based around subcutaneous electrical stimulation. Before she had even explained what exactly that meant and what that would involve, I was already fighting to hold back my “yes.” She explained that the basic idea of the trial was that they believed that signals may be making it from my brain, passed the break, and to the intended location but that the signal was too weak to trigger a response because of the break. In the trial they would essentially be using the familiar electrical stimulation pads to pass a predetermined amount of current at a specific frequency across the break in the spinal cord; this stimulation is not enough to trigger a response, but is just enough to where the small amount of signal making it from your brain, in combination with the stim, is able to trigger a response. Imagine you are trying to see over a fence and even if you jump you can’t manage to see over, this base stimulation is like adding a box for you to stand on; the box isn’t tall enough for you to just see over the fence, but if you stand on the box AND jump, you can see over. The simplest way to put it might be, “you aren’t paralyzed, the signal is just not strong enough.”

Needless to say, I jumped at the opportunity; it wasn’t really about regaining function or feeling, even though it was theoretically possible, it was mostly an unrelenting curiosity about the study. I was already super entertained by the cruder version where they just passed current through the muscle forcing it to contract. Again, the study was broken into two sessions, a PT session and an OT session. In both cases, electrodes were hooked up to my back to help me sit more upright while the current was turned on. In the PT session I was back in the PEAK center, but this time not using any of the fancy equipment, just sitting on the edge of a therapy table. The electrodes were hooked up to my neck and lower back and the program would be started and I would feel a slow ramp up in the electrical current. The pads would be shifted around depending on the specific action we were going for. For the OT session I was back in the outpatient gym, again sitting on the edge of a therapy table. The electrodes were placed on my neck and arms, depending on the action we were trying to pattern. On the surface, it all looked very similar to the previous trial that I had been in, except this trial was using a new specific non-FDA-approved stimulation device to target the nerves rather than the muscles.

My first session was a PT session in the PEAK gym and I don’t think I knew what to expect, but I certainly was not mentally prepared for what was about to happen. To find the appropriate power level, they would slowly increase the power and feel for an increase in small muscle twitches caused by the stim. They would try to avoid the power levels going past a certain threshold where more major muscle contractions begin. Essentially, you want to get the power level to a point just below where larger muscle contractions begin so that the small input from the patient’s brain pushes the total signal strength beyond that threshold. As the stimulation was turned on there was a slow ramp up in tingling sensation and at some point, my back pulled tight, sitting me up straight rather than being slouched over like an extraordinarily unenthusiastic teenager. That was not all that new, but it was always entertaining. When the stim started to get to full power, things started entering a new territory in terms of sensation and effect. I felt a strong tingling sensation all down my legs, what I could feel of them anyway, and my legs began to tremble ever so slightly, as if they were on the verge of switching to full blown spasm. I tried my best to just sit there and not screw things up somehow, but at some point, I was asked to go ahead and try straightening my leg… voluntarily. I wasn’t expecting much at first, probably a lot more testing and tuning to get things to even maybe work; instead, the second I asked my legs to straighten out, rather than just cause a spasm, it was if someone were testing the reflexes in my knee and just struck it with that little mallet. I immediately grinned as if I had just learned some sort of dark magic and I tried again, again my leg was subjected to my wizardry and once again kicked forward.

The possible implications of what was happening were masked behind my excitement and amusement in it all. I just moved my leg for the first time in 4 years. To be clear - this was not the first time my leg had moved, but it was the first time it moved because it was listening to me. It’s kinda like I had lived with a dog for 4 years that just never listened to my commands and one day someone comes by and says, “oh hey, I think she’s just almost deaf” and gives her a hearing aid and voila, you call, she responds… “huh, it was that easy?” Of course, it wasn’t like I had full control of my legs; I was only able to manage brief spurts of activating a single muscle group. But still, I was moving my legs, on my own… mostly. For the most part, I never really had an acute emotional reaction to being able to move my legs; I was too occupied with trying to understand what was happening, how to maximize the action, and trying to figure out how to get more refined movements, despite the ever-changing signal path due to the pads shifting as my skin moved or as the pads were repositioned. The general giddiness from seeing my legs move lasted for quite some time after the session was over, raising my general mood. I had to restrain from posting or sending people the video of my legs kicking because of the false hope it might give people.

When I went to the OT sessions, the results were much more muted and subtle. The electrodes were hooked up to try to give me control of small muscles in my hands. Given the difference in size between the muscles in your legs and those in your hands, it’s not a huge surprise that the resulting movements were much more difficult to see. Rather than a big kick of my legs, I would strain just to get my thumb to creep towards my index finger. It’s a bit funny how exhausting just the mental strain is; it almost feels embarrassing how drained I was just from straining to move my thumb, often with no results, as if I were doing a max deadlift. The most significant movement that we achieved was the ability to get my thumb to creep towards my hand. It wasn’t a monumental movement but it definitely felt like a monumental achievement.

For both the OT and PT sessions there were days when my body wasn’t cooperating and everything was just too uncomfortable, and days when the stim machine or electrodes decided not to work. If we couldn’t continue for whatever reason, we would just call it and end the day; half of me was upset we couldn’t continue, I always assumed it was my fault, but the other half was actually relieved that I could go home and rest. By the end of the trial, I had learned to control things a little better and was working on separating the actions of my left and right legs, something that was surprisingly difficult. I went through the final evaluation to determine if I would continue for another round. The evaluation was essentially me trying to do everything I had been doing with the stim but this time without the stim. It was a pretty sad little moment when I couldn’t replicate any of the movements and slowly realized that I wouldn’t be asked to come back for another round. At that point I just started working on accepting the inevitable rejection so that when they gave me the news, I could take it with a smile. The majority of that was for their benefit; I am acutely aware of how difficult it must be for them to deliver the news, especially if the person in my position is asking, begging, or pleading to stay in the study. Besides, I figured that if they were able to get more valuable data by including someone else in the study, that would be most beneficial for all SCI patients. I still wish I could have kept going and seen if I could have regained function or sensation. It is definitely the most intriguing therapy or theory I have seen to date; a thought that still lingers, surfacing from time-to-time.

Recently, I read a medical paper titled “Activity-dependent spinal cord neuromodulation rapidly restores trunk and leg motor functions after complete paralysis,” out of Switzerland that detailed the continuation of the study that I was in. The first line of the abstract reads, “Epidural electrical stimulation (EES) targeting the dorsal roots of the lumbosacral segments restores walking in patients with spinal cord injuries (SCI).” OK… you have my attention…

Instead of using electrodes attached to the skin, the study focused on a surgically implanted device in patients with a fully severed spinal cord. They used nuclear magnetic resonance imaging (nMRI) and computer aided tomography (CAT) scans to map out the size and layout of the neurons in the spinal cords of 27 fully able patients and used this data to create a predictive model of the average spinal cord. They used that model to determine the locations for the surgically implanted electrodes and fine-tuned the current levels for each of the 3 patients with complete spinal cord injuries. At the time of the study, gross movements of the lower body were executed using a tablet where the user would select the desired pattern. The hope is that, eventually, the device will take direct input from the brain to execute tasks, bypassing any strange external device UI. The amount of progress being made with these technologies is really impressive and gives a lot of hope for the future. However, as with most of these interventions, the earlier the patient has access to the treatment, the greater the realized gains, on average. Hopefully, in the next few decades, there will be a switching point where people who break their neck or back no longer stare down a lifetime of paralysis.

I obviously have a mix of emotions surrounding this progress. I want to do everything possible to help advance these technologies, but I also realize that I might find myself outside of the group of eligible patients, being too far post injury. I am almost jealous of future patients who may benefit from the technology, but hopefully any negative experiences I go through will help someone in the future have an easier time somehow; if that is the case, I can convince myself it was worth it… I’m still jealous though.